Explain Procedures & Results

The Massachusetts Alzheimer’s Disease Research Center has created several guidebooks that aim to educate patients and their families on a variety of topics.

The Cleveland Alzheimer’s Disease Research Center offers information to educate patients and family members about brain donation.

These resources from the National Institute on Aging are designed to support Alzheimer’s Disease Research Centers in encouraging brain donation via their social media platforms.

This video explains how participants in LEADS, an NIA-funded study, can choose whether or not to receive genetic results and what these results mean.

This decision aid from AGREEDementia helps patients with MCI decide whether or not to undergo brain amyloid imaging.

Using research results, Alzheimer's disease scientists developed materials that communicate information to participants about the risk of developing Alzheimer's.

Gene Test or Not? is an online decision-making tool designed to help people decide about whether they should have the APOE genetic test.

This paper describes the development of a standardized approach to disclosing amyloid imaging research results to people with mild cognitive impairment.

Research participants who intend to donate their brains to a study on Alzheimer’s and related diseases are reliant on family members to fulfill the donation plan. Thus, family members play a pivotal role in increasing brain donation rates, particularly among underrepresented groups. In this study, researchers conducted focus groups with a total of 15 Latino adults who each has a parent age 65 or over. Analysis of the discussions support inclusion of family members during all stages of the...

People with Alzheimer’s disease are vulnerable to therapeutic misconception, particularly, the conflation of routine clinical care and scientific research. This misconception can compromise the informed consent process by causing prospective participants to underappreciate the level of risk involved in trial participation. The authors advocate for a more comprehensive informed consent process that accounts for the uniqueness of Alzheimer’s disease, creates a more productive and clear...